• Hello everyone!

    A few more oxygen questions for you all, as our pulmonologist is just dreadful.  Never responds to any of my questions!  And he practices at the second best hospital in the country (?) Just dreadful!

    Nasal cannulas… I’ve been reading that basic nasal cannulas aren’t meant for a flow rate above 5 or 6 lpm (?)  Then what are yo…[Read more]

  • Thanks, Charlene.

    Caring for a 93 year old, I simply don’t have time to search through every thread.

    And thanks for the response.  The reason why I ask about Metformin, is because my mom was prescribed Nitrofurantoin in December of 2016, and I’m sure you know what happened.  She was in MGH for 5 days with pneumonia.  I was livid.  Now, I try to…[Read more]

  • Hi Jaime – thank you for responding.  Mom is on a low dose, only 250mg.  It seems that she has good days, and bad days with her fibrosis.  It’s like some days she requires more oxygen, and some days not so much.  Wondering if anyone else has had this happen?  I would definitely say that your IPF has been very good to you.  🙂  Again, thanks…[Read more]

  • Thanks, Ken.  I’ve been reading about studies online stating that Metformin somehow lessens/reverses ILD.  While I’m very skeptical based upon all the reading I’ve done that this disease is irreversible, it was giving me some home to cling to.

    Virginia: I haven’t been able to discuss the validity of any of these studies with my mom’s p…[Read more]

  • Jerry Genesio and Profile picture of KristinKristin are now friends 4 weeks ago

  • Hello everyone.  I hope you are all well, and in good spirits.  This is a trying time for all of us with Covid-19.  I am now working from home full-time, and grocery shopping at Walmart at 10 pm om Friday evening each week.  Mom and I are going for coffee, and enjoying it in the germ-free confines of my car.  As you know, mom is 93 years old, with…[Read more]

  • Kristin posted an update 4 weeks ago

    Things are ongoing here in Boston. We now have covid-19 in the area. Just when we were emerging from cold and flu season. I’m working from home, so as not to potentially contract covid-19 and spread it to mom. Life just keeps getting us both down…

    • Hello Kristin, thanks for the update. It’s very sad what is going on in the world right now. Stay positive and proactive. Best wishes, Mark.

  • @casey

    Hello Karen:

    Thank you so much for the suggestions with regard to dressing my mom, while she is wearing her oxygen.  It is a learning experience for us both.  I try to allow her to dress herself to give hear some sense of independence.  I like to do things myself, and my mom feels the same.  I rigged up a hook in the bathroom that con…[Read more]

  • ARMY PETE and Profile picture of KristinKristin are now friends 4 months, 1 week ago

  • Thank you to everyone for the suggestions. 🙂 I’m so happy that I found you all! It’s so hard going through this alone! We have an appointment with MGH Cardiology tomorrow. It’s tough because the symptoms of heart failure mimic those of the ild/fibrosis, and mom has RVSP/elevated RA pressure, from her echo of a few weeks ago.  With regard to…[Read more]

  • Hello… I’m the caregiver to my 93 year old mom. We live together, and I love caring for her. Questions:  It’s hard to wash and dress her in the morning, and put on pj’s in the evening while she’s wearing her oxygen, so we remove her cannula for these activities.  A few questions… is it ok to do this?  Her level goes from 89ish to 79ish, and th…[Read more]

  • Kristin posted a new activity comment 4 months, 3 weeks ago

    Thank you, Mark. I’m caring for my 93 year old mom with this, trying to keep her symptoms at bay. She is on oxygen and I’m trying to keep her between 2 and 3, as her nose gets runny so easily with oxygen. I don’t know when this disease is going to get worse. Her cough is there, but they’re blaming post nasal drip from the oxygen… I just never…[Read more]

    • Hello Kristin, it is unfortunate your mom is suffering with this disease. Many pf patients experience post nasal drip and there have been recent topics regarding this symptom. Ask her physician what he would recommend to alleviate her post-nasal drip. The only thing I can tell you for certain about this disease is that it has a mind of its own. No…[Read more]

  • Kristin posted a new activity comment 4 months, 3 weeks ago

    Thank you. It’s very tough being a caregiver to my 93 year old mom with this disease. I don’t know what will happen when, and I’m trying to do the best I can to manage her symptoms. There’s no timeline with this, and I don’t know when it’s going to get worse. I just can’t understand it, so I hope you all can help me along the way… thank you!

    • Hi Kristin,

      Thanks for getting back to us and sharing a bit about your experience caring for your Mom. I’ve always said that I think caregivers deserve the utmost praise and respect, as I can’t imagine the struggle or feeling of wanting to take this all away from us patients and not being able to. You are all saints, so I hope you aren’t too…[Read more]

  • Kristin became a registered member 4 months, 3 weeks ago

    • Hi Kristin, welcome to the PF forums. Thanks for joining us!

      • Thank you. It’s very tough being a caregiver to my 93 year old mom with this disease. I don’t know what will happen when, and I’m trying to do the best I can to manage her symptoms. There’s no timeline with this, and I don’t know when it’s going to get worse. I just can’t understand it, so I hope you all can help me along the way… thank you!

        • Hi Kristin,

          Thanks for getting back to us and sharing a bit about your experience caring for your Mom. I’ve always said that I think caregivers deserve the utmost praise and respect, as I can’t imagine the struggle or feeling of wanting to take this all away from us patients and not being able to. You are all saints, so I hope you aren’t too…[Read more]

  • Kristin's profile was updated 4 months, 3 weeks ago

    • Hello Kristin, welcome to our pulmonary fibrosis forum. We are happy to have you.

      • Thank you, Mark. I’m caring for my 93 year old mom with this, trying to keep her symptoms at bay. She is on oxygen and I’m trying to keep her between 2 and 3, as her nose gets runny so easily with oxygen. I don’t know when this disease is going to get worse. Her cough is there, but they’re blaming post nasal drip from the oxygen… I just never…[Read more]

        • Hello Kristin, it is unfortunate your mom is suffering with this disease. Many pf patients experience post nasal drip and there have been recent topics regarding this symptom. Ask her physician what he would recommend to alleviate her post-nasal drip. The only thing I can tell you for certain about this disease is that it has a mind of its own. No…[Read more]

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